This is the third in a series addressing unmet needs in people with dementia. As we've discussed, unmet needs, which often get expressed as negative behaviors, generally fall into one of three broad areas: personal health, physical environment and social environment. Last week we covered unmet needs related to personal health and physical environment — and now for some thoughts on unmet social needs.
I think we all recognize that dementia is associated with a great number of losses — loss of identity, independence, control, connectedness, meaning and purpose. It is the social environment, including relationships with others, that influences just how deeply these losses affect a person's quality of life. Dementia is a condition in which a person's ability to nurture their own social needs is undoubtedly compromised. Consequently, depression, paranoia, agitation, irritability or even aggression can be expressions of unfulfilled social needs.
As caregivers, family and friends, we can be mindful of the social needs for the person with dementia. In fact, we need to see ourselves as a powerful tool in this regard. We have the ability to dramatically impact well-being through the ways in which we engage, interact and communicate with the person who has dementia.
It's about providing the person with dementia with those things that we all crave and frankly need for basic human fulfillment but are often not even aware of. Here are some of those needs:
•Meaningful activity and a sense of purpose. We all want to have something to do, to help others, to feel needed, and to "work." For a person with dementia, this means engaging in activity that reflects that individual's preferences, values and life history. This is what one reader posted recently: "My mom is living with Alzheimer's. We have found when she has a 'job' to do she is much happier than doing nothing. She goes to day care every week day where she helps in the kitchen and sets up for art projects, this is her work. As a family we create meaningful 'jobs' and accommodate the need to have purpose."
•Sense of autonomy. This means having choice and a sense of control. Each of us needs to believe we have control over our own life and this does not change with dementia. On the surface, it may not always seem possible to offer a person with dementia complete choice and control (and in some cases we cannot especially where safety is at stake), but there many ways we can help every day. Sometimes I think of it as offering an illusion of control. For example, saying "Roger, you need to take your pills now." takes away a sense of control by telling someone what they should do. You might reframe that and say: "Roger, I know you prefer to take your pills before 8 a.m., let me get you a glass of water." Similarly think about offering choices, "Are you thinking of dinner at 5 or 6?"
•Sense of identity. We all need to be around people who know us and know our story. People with dementia need to have their identity validated and their preferences known. They need to be seen a whole person. When you reminiscence or tell and re-tell your loved one a piece of their life story you are building identity and self-esteem.
•Belonging and connectedness. Humans have an innate need to feel connected. We are social beings with a fundamental need to belong and be accepted. Connectedness is more than a "feel good" thing. It affects our physiology, impacting depression, stress and even our immune system.
•Love and acceptance. Everybody needs it, everyone needs to feel it. Period.
•To understand and be understood. We all need to feel heard and understood, yet there may be no greater place where this is challenged than in persons with Alzheimer's disease and in the relationship between the person with the disease and their family and caregivers. Effective communication will dramatically improve the quality of life for the person with dementia (and for you). Yet, knowing how to communicate with a person who has dementia is a new skill and it will take some time to master, but I can guarantee that the payoff will be substantial.
Below are some basic, yet very effective communications techniques.
•Set a positive mood. Your attitude and body language communicate your feelings and thoughts stronger than your words and will generate reassurance and a sense of contentment.Perhaps what is most important is to remember that when we communicate in this way, we're letting go of our own need to control a disease that we simply cannot control.
•Employ therapeutic reassurance (fibbing). We want to be honest with people. However, when someone has dementia it may lead to excess distress, for both them and the caregiver. Does it really matter that your loved one thinks she's employed at the day care center or that you are being blamed for losing their eyeglasses (or a myriad of other things you might get blamed for)? Don't try to correct — go with the flow. Being "right" is rarely helpful. If you want to diffuse the distress try, "Yes, I am always misplacing things. Let's look for your glasses."
•Recognize that being reasonable, rational and logical may just get you into trouble. When someone is acting or speaking in ways that don't make sense, we want to correct and explain. Straightforward, simple sentences without unnecessary rationale are usually the best.
•Listen with your ears, eyes and heart. Be patient in waiting for your loved one's reply. Try to listen for the meaning and feelings behind the words. Sometimes simply validating the emotion, "I can see that you are feeling sad, frustrated or scared," is enough. One reader explained it like this: "My Dad either escalates the behavior or calms down depending on the actions and words of the caregiver. He needs to be validated and 'heard' just like all of us. He sometimes calms when he is verbally affirmed and validated. I am learning to respect his words and actions — to listen and observe with new ears and eyes."
I hope and believe that as a culture we are beginning to see behavior as an expression of a person's needs and wishes. And when we know the person in all their uniqueness we can take the edge off of this devastating illness though our relationship with them. And that's what its' really all about — all of us in a relationship.
"Someone to tell it to is one of the fundamental needs of human beings." — Miles Franklin
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